Many people associate Social Security benefits only with retirement, but benefits are also available to people who meet the government’s definition of disability. During a teleconference between officials of the Social Security Administration (SSA) and the National Organization for Rare Disorders (NORD), of which the Hereditary Neuropathy Foundation is a member, SSA provided an overview of its disability programs. We are sharing the highlights here because many people living with Charcot-Marie-Tooth may qualify.

Two Types of SSA Disability Programs

The SSA administers two disability programs:

  • Social Security Disability (SSD): Provides benefits for workers who have become disabled and for adults who have been disabled since childhood.
  • Supplemental Security Income (SSI): A needs-based program for children and adults with limited income and resources who meet the definition of disability.

The SSA’s Definition of Disability

To qualify for SSD or SSI, you must have:

  • A physical or mental impairment, or a combination of conditions
  • An inability to perform substantial work activity
  • A disability expected to last at least 12 consecutive months or to result in death

Within the SSD program, disabled workers may also be eligible to receive benefits for their children after age 18 if those children are themselves disabled. For adult children, the SSA’s definition requires that the disabling impairment began before age 22, results in marked and severe functional limitation, and is expected to last at least 12 months or result in death.

How to Apply

Applications can be completed online at the SSA website. Reading the home page before filling out any forms is strongly recommended, as it answers many common questions and simplifies the process.

For SSD benefits, there is a five-month waiting period from the onset of disability before benefits begin, allowing time for temporary benefits such as short-term disability. There is no waiting period for SSI benefits.

To apply for SSD as an adult, complete the online application along with the Adult Disability and Work History Report. The same form is used for SSI. Print a copy before submitting. After submitting, contact a Social Security office to schedule an appointment to complete the process, either in person or by phone. You will need to describe your condition, provide information about your treatment providers and medications, and share your education and work history, along with authorization to release your medical records.

What Happens After You Apply

Your application is forwarded to your state’s Disability Determination Services (DDS) agency, which contacts your medical providers for records and may request additional information about how your condition affects daily activities. DDS may also request a special examination at its own expense if more information is needed.

If your claim is approved, SSA will send an award notice describing your benefits and any reporting requirements. If your claim is denied, you will receive an explanation and have 60 days to appeal. An appeal requires completing the online appeal form, Form 13441 (Appeal Disability Report), and Form SSA-827 (Authorization to Disclose Information). Form SSA-827 must be printed, signed by hand, and mailed to SSA.

After 24 months of receiving disability benefits, you will be automatically enrolled in Medicaid. In most states, an SSI application also serves as a Medicaid application.

Programs to Speed Processing

The SSA has introduced two programs to improve processing times:

  • Quick Disability Determination (QDD): A statistical screening system that flags initial applications likely to be approved and supported by sufficient medical evidence for faster review.
  • Compassionate Allowance Initiative: A list of conditions (113 at the time of this writing; CMT is not currently included) that qualify automatically as disabilities with minimal medical documentation required.

Contact and Resources

To contact the Social Security Administration, visit www.ssa.gov, call 800-772-1213, or use TTY 800-325-0778.

Additional SSA publications with detailed information:

  • Disability Benefits (publication 05-10029)
  • Supplemental Security Income (publication 05-11000)
  • Benefits for Children with Disabilities (publication 05-10026)

For more information about living with CMT and available supports, visit our patient resources page.